Continued Success
 

Just wanted to post a quick update.

As of today I take 1 capsule of Rytary 23.75/95 mg 8 times a day starting at 6 a.m. every two hours, plus 1 Amantadine 100 mg and 1 benztropine 1 mg. AT 6 AM and 2 PM. I also have my 2 Ubiquinol 300 mg supplement which I take at 6 am and 2 pm.

Problem #1: Memory loss. I am searching for just what is contributing to memory loss. MRI is scheduled. I will update after I hear the results.

THAT IS REALLY THE ONLY MAJOR NEGATIVE FACTOR! I almost never, NEVER shake. I have very few ON and OFF moments. Food interaction is minimal to moderate but does not cause a crash. A little "restless leg" action is very tolerable.

What did my doctor (MD) say when I went in to see about my bloodwork, if it is normal? "You got Parkinsons, deal with it." This is just wrong thinking. Maybe I am declining into the deeper pits of this disease. After all, I have had it for almost 30 years. Caregivers, fellow PD sufferers, don't give in. Keep looking and experiment and you may be able to find a better path. A year ago I nearly resigned myself to DBS and today my symptoms are so manageable. Although I have lost my ability to fly, roller skate (I tried this two weeks ago-I used to be pretty darn good), ride a motorcycle off road, etc., there is so much I can do!

However, this disease affects all of us differently. If it doesn't today maybe tomorrow...Hope this helps someone today.

Jim

Hi Jim,
I like your smart posts.
About memory loss: usually PD aggravates problems. My memory of names and numbers was never good, it got much worse with first symptoms of PD.
So this may hint you if your problem is attributable to PD, but every case is different.
Take care, Jacob

Memory
 

Thanks flashinet. Yes we are considering PK as the culprit both have other considerations mainly concerning the meds. Thank you for your kind comment.

The message I hope comes through is that you may not be able to see your PK symptoms improve and the doctors may have told you that you have to accept things as they are, there is still hope. Research the meds you are taking. With your doctors help try changing them out. Read the histories of people and be willing to try things with your doctors help. But you can lead if the doc is not willing. A year and a half ago I was thinking my life was ending. After changing the meds I have changed for the positive as well. I can go into more detail as to how I changed but it is a slow process and the suffering has to be worth the effort. For me it was.

I am so thankful for my 6 year old daughter because I have to live for her. And the rest of my family. I rented a house that is two stories so I could be forced to climb stairs several times a day. I drive a dune buggy off road with my son on his motorcycle. I took my kids roller skating (yes I did) but one fall showed me I need to stop trying to do things I used too and accept certain lost skills (aircraft pilot, skater, off road motorcycling etc.). Some of those things are likely gone for good but who knows?

I know some of the things I say are difficult or impossible for some to understand. And I am certainly not bragging. But if you or your caregiver sees any validity in these posts try to get out of the thinking that things are hopeless. IT IS NOT. But we have to keep trying.

Lastly I want to say thanks to all who have helped me on my almost 30 year journey with PK. In retrospect I could have been much more cognitive and responsive to this disease. But for almost 25 years I have taken this disease on, not changing so much but certainly changing. But for the last 3 years or so I could see the writing on the wall. And that brings me to this statement from Game of Thrones: "Every time I come back, I'm a little bit less. Pieces of me get chipped away."

Ditto for me.

Jim

Jim, if you like to experiment you may want to see this:

Minding your mitochondria | Dr. Terry Wahls | TEDxIowaCity - YouTube

This is Dr. Terry Wahls video on how she reversed MS with a diet.

I'm on this diet for 4 months. No grains, no sweets, green smoothy in the morning. I wouldn't be able to eat so many leaves, smoothy is disgusting but doable. Red veggies I couldn't do.

Lost 14lbs, no constipation.
My PD didn't reverse. May be it develops slower but how would I know?
Hope this helps,
Jacob

I take amantadine and cogentin or benztropine only. When I started them then immediately my memory suffered!! This is part of the side effects of these drugs.

Thank you for sharing your journey with all of us. It really gives one another perspective.

it may take longer to see a change
 

I read somewhere that Dr. Wahls did not see any improvement until she had been eating as recommended in her book for nine months. I know everyone is different, but thought I'd mention this so that you don't get discouraged. You may just need to stick with it longer before you see improvement.

I will say, it's a very hard diet to follow, so congratulations on sticking to it for four months. Let us know how it goes:)

Rytary Update
 

Sorry for the late update. I've been unable to set time for this but I have been thinking I should update to share the wonderful results I am getting and have gotten for many months now.

First let me say again that I am not a doctor or medical person and I don't play one on TV :D. Everyone is different and each of us must do as we see fit. I offer this up to show my experiences with Rytary and hope that it will give some of you hope and a map of how I got to where I am-MUCH IMPROVED!

The same applies from my earlier posts:

Caregivers, fellow PD sufferers, don't give in. Keep looking and experiment and you may be able to find a better path. A year ago I nearly resigned myself to DBS and today my symptoms are so manageable. Although I have lost my ability to fly, roller skate (I tried this two weeks ago-I used to be pretty darn good), ride a motorcycle off road, etc., there is so much I can do!

With your doctors help try changing the meds, slowly and record the results. Read the histories and experiences of people and be willing to try things with your doctors help. But you can lead if the doc is not willing. A year and a half ago I was thinking my life was ending. After changing the meds I have changed for the positive as well. I can go into more detail as to how I changed but it is a slow process and the suffering has to be worth the effort. For me it was.

I now have almost no on/off times, NO SHAKING, eating continues to be an issue, no constipation, etc., etc., etc.

Let me encourage you to ask questions and experiment with your doctor.

Life is great!

Jim